Discussions By Condition: I cannot get a diagnosis.

RA, fibromyalgia? what do you think?

I am fixing to go to my 4th doctor about this problems and I going crazy with getting the run around. If there is anything that you can think of that might fit this problems please let me know so I can research them to have questions to ask the new doctor( I will have my files sent to him before hand). I am driving 2 hours from my town to see this doctor that I have been researching.

All of this has happened in the last 6 months.

This is the order that I remember to the best of me that it came. I never have fever; and none of the spots are red. I hit my right fourth toe on a chair months ago and it is sore sometimes from the toe up about 3 inches into my foot on top and bottom, I can’t pull my toe up at all. When I stand up on it at work it burns really bad. My fourth finger on my left hand swells really bad like a sausage almost everyday and stays that way for hours if not all day, may one day a week it will go down(this is the worst of everything to me). In have also noticed that when I salty things the swelling is worse, even if I drink tons of water. My fourth finger on my right hand does not swell but is more of pain from my finger into my palm. I can’t bind them when I get up in the morning. On both fingers if you squeeze the bones they hurt extreme bad. Not all the time but most of the time they do. I woke up one morning and my neck hurt really bad I thought that maybe I had slept wrong but the pain never goes away, I can’t turn my neck to see on traffic when turning onto a road I have to get up in my seat to see if something is going. My thumbs hurt, normally, both at once to where I can’t pull them in to pick anything up. I can’t grip to open my meds, a bottle anything like that. My left wrist is swollen and I wear a brace on it at work but it normally does nothing but doesn’t let it get any worse. My left wrist does not hurt. In both of my thighs the muscles ache and a have a hard time walking after I have been sitting for a while (20 minutes sometimes). I have lower back pain and knee pain. The knee pain sometimes is horrible; I have to wrap them up in blankets and go to sleep. In the past two weeks I have been having unbearable pain in my arms. In both normally from the elbow to the wrist, the muscles hurt more than anything, it feels like my elbows are going to pop but they can’t. In the morning it is so bad that I can’t brush my hair, wash my hair and sometimes put my own clothes on. I have tried celebrex, mobic, 800 ibuprofen, and sulfasalazin 500. The last one I tried to take but the pills are awful. I could not get them down. My sed rate is always extremely high and they don’t know why. I have had 2 rh test done and they are both negative. I am going to try another doctor, hoping that it will get better. Cortisone shots don’t help I have had 2. Uric test was good, FANA test was okay, C reative protein was okay, and the parvo test was negative. Negative lupus test. He said that he thinks that is it the start of Rheumatoid arthritis or fibromyalgia. What do you think??

14 Replies:

Your symptoms sound like something gonig on with your endocrine system. Have your doctor test you for TESTS:1. cortisol (adrenals) (salt cravings), 2. diabetes (swollen body parts and need for water) and 3. thyroid (which has many, many symptoms). If you see a GP first, as a note, for thryoid be sure to get ALL these tests no matter what the doctor says (not all doc are very up on thryoid conditons and they can be tricky)...FT4, FT3, TSH and the antibodies for the autoimmune diseases of the thryoid Graves and Hashimotos....Keep in mind the TSH should be between 0.3 and 2.5....some docs think a TSH of 5 is normal...but it is NOT. BEST ADVICE: Given that you may also be dealing with multiple edoncrine issues (diabetes, adrenals, and thryoid), I would suggest you see a specialist called an endocrinologist who can handle and interpret the results... good luck, Joan

I have been tested for diabetes, because I was craving water all the time, and the test came back fine. My thyroid was checked in Feb when I went to the GYN for my yearly. I am trouble losing weight and it was normal to. I have notices that if I eat a lot of salt that it tends to make everything worse.

Hi again. I want to help so I am questioning again you test results especially with thryoid. Do you have your lab reports and can you post your results on thryoid here? Also for cortisol did you have any tests? Thorough testing of the adrenal glands involves four times a day blood and urine tests and sometimes saliva....maybe an ultrasound..... It is not so common to have adrenal problems so doctors don't push this much...but if you have been suffering for a long time, I think you deserve for them to start looking at stuff that may not be all that common. Also your doctor may be right with what he recommended. You may want some more thorough testing of autoimmune diseases. Joan

My thyroid was tested a year ago and it was 1.86 on a scale of .35 to 5.5. Guess I need to have it checked again. I did only have the THS checked on the t3 & 4. I have noticed that my hair is falling out, REALLY thinning more than anything else.

A TSH of 1.86 is ok, but with out the FT values and testing for the autoimmune diseases you do not have the clear picture. First, for TSH please know that 5.5 is way too high as the normal range! Anything over 2.5 or 3.0 would need treatment for thyroid. Yes, do get it checked and fibromyalgia and low thryoid are often seen together and once the thryoid is properly treated fibromyalgia symptoms often improve with many people. IT IS SO easy to test for thryoid problems...just a little blood....you may NOT have a thryoid problem, but since it is so easy, I think it is worth a try.... Please reread my post here about the recommended thryoid tests (including those for the autoimmune disease of the thryoid hasimotos and Graves) and ASK DOC TO DO THEM ALL....if he doesn't want to do them, I would find another doctor...after all this time I think you deserve some "special" tests and some answers! If your hair is falling out you are suspect for thyroid problems. That is a common symptom so that is why I recommend the testing again. I also had my hair falling out with thyroid problem and at another time with declining estrogen in perimenopause. Ovarian hormones are also suspect. GYN may be able to do tests for ovarian hormones, progesterone, estrogen FSH and all that. In meantime what about some Omega supplements? I am not sure, read up, but may help some of your joint and stiffness....can't hurt anyway and is healthy and good for the body in any case.....Joan

Thanks so much I am going to see a thyroid specialist. I do have endometriosis, don't know if that has anything to do with it. The last time I had thyroid checked some of the problems were obvious to me but not the dr, but since then everything has got way worse than before. This is a new dr maybe he will not think I making the stuff up. Can you have normal results and still a thyroid problem?Ashley

My thyroid was tested a year ago and it was 1.86 on a scale of .35 to 5.5. Guess I need to have it checked again. I did only have the THS checked on the t3 & 4. I have noticed that my hair is falling out, REALLY thinning more than anything else.Yes, you need to have the FreeT4 and FreeT3 checked to get a clear picture along with the TSH. There's a rarer type of hypothyroidism where the TSH is low to mid range and the FreeT4 is very low in the range or even below range. That's why all the tests are important.If your sed rate is always high and your RA test is positive, that's Rheumatoid Arthritis. It can start similar to what you explain.My husband has it and it started as a virus.There's a doctor who treats it with tetracycline and has a good success rate.

Thou FM affects all over the body, the high sed rate is indicates that you have got something other than Fibromyalgia.. I think it points more towards RA as other poster said. With Fibro.. it is unusual to get swelling with it... usually just pain all over the place but everything looks normal.

My sed rate is always high and my ra test are always neg. I have had the FANA, CRP, creatinine, liver, and parvo test all were neg and all help test for RA. That is the main reason that I think it is not RA. That and I have taken 3 different types for meds for RA and none of them changed or helped anything. All the problems seem to be coming on to fast to be RA, everyting that I have read about it says that it is a slow coming problem. And the Cortisone shots did not help but seemed to make things worse for a few days. Can you have thyroid problems and your test be fine?

My sed rate is always high and my ra test are always neg. I have had the FANA, CRP, creatinine, liver, and parvo test all were neg and all help test for RA. That is the main reason that I think it is not RA. That and I have taken 3 different types for meds for RA and none of them changed or helped anything. All the problems seem to be coming on to fast to be RA, everyting that I have read about it says that it is a slow coming problem. And the Cortisone shots did not help but seemed to make things worse for a few days. Can you have thyroid problems and your test be fine?What is the sed rate and it's range?Yes, you can have "normal" looking thyroid tests. You'd have to test positive for thyroid antibodies. The TSH above 3.0 is considered hypothyroidism.Hyperparathyroidism is another endocrine condition where the calcium level is high and the PTH or Parathyroid Hormone is elevated.This website has info about it:http://www.endocrineweb.comhttp://www.rheumatology.org/public/factsheets/index.aspHere's a link to information on rheumatogical disorders.

My sed rate is always high and my ra test are always neg. I have had the FANA, CRP, creatinine, liver, and parvo test all were neg and all help test for RA. That is the main reason that I think it is not RA. That and I have taken 3 different types for meds for RA and none of them changed or helped anything. All the problems seem to be coming on to fast to be RA, everyting that I have read about it says that it is a slow coming problem. And the Cortisone shots did not help but seemed to make things worse for a few days. Can you have thyroid problems and your test be fine? nods.. it does sound as if it it may not be RA. I personally think by the sounds of it, you have something else causing your symptoms (thou my opinion probably doesnt count for much there as i dont know much about RA). ...................................................... Just dont let a doctor flob you off with just a fibromyalgia (FM) diagnoses thou if they cant work out what is wrong!!. I'll give you FM info so you can make sure that doesnt happen. (I get FM as one of my CFS symptoms so know what fibro is like. FM can be a symptom of other illnesses). First of all with FM.. pain often flares from certain places (thou can be happening in more places is one is in a bad flare). These are known as the FM trigger or tender points. For a proper FM diagnoses.. these 18 points are pressed with a certain amount of pressure to see if you have pain in these tender points. (note the specific places .. you will need to see someone who specialises in FM some for this test as most doctors do not know the points) http://www.immunesupport.com/fibromyalgia-tenderpoints.htm FM diagnoses used to be only made if someone is tender at 11 of the 18 tender points (under certain pressure). (thou some are now saying that could possibly have FM without having 11 of these as being painful but many specialists will not give that diagnoses without 11). The American College of Rheumatology criteria for fibromyalgia says at LEAST 11 have the be PAINFUL (not just tender) for diagnoses. "FM Diagnosishttp://fmcfsme.d-3systems.com/images/concept_ideas/new_look/tenderpoints1.gif Because no simple lab test is currently available, Fibromyalgia (FM) diagnosis requires a hands-on evaluation by a skilled medical professional. This evaluation usually consists of:1. Ruling out medical conditions whose symptoms mimic FM (i.e., Thyroid Disease, MS, Lupus, etc.)2. An extensive medical history which includes a discussion of the nature and duration of specific symptoms.3. A physical examination which includes a tender point exam. The criteria used for diagnosis is widespread pain for a duration of more than 3 months. Also, pain in 11 of the 18 tender point locations when a pressure of 4 kgs is used at the tender point location." (the above is from http://fmcfsme.d-3systems.com/fm-diagnosis1.php ) .............................. I find that i can hurt all over due to this (pain flaring out from every point) ... or the FM can be quite minor. As the points are very specific.. eg take the knee tender point for example just on the inner side of the knee. I can have no pain there unless there is pressure on that area eg when that's in flare i cant sleep on my side with my legs together.. as the pressure on inner knee to inner knee.. would hurt. (other places on my knee thou would be fine.. so pain was coming from a definate FM tender point)................................. anyway..if you still think you may have FM or your doctor does think that.. Demand for him to refer you to someone who knows how to properly diagnose it to rule it out or in. (You may have it with another illness.. but certainly i dont think if it's that, it ISNT your whole picture.. but it could be part of another illness.. and as i said. swelling or high SED dont happen in just FM).

Thanks so much I am going to see a thyroid specialist. I do have endometriosis, don't know if that has anything to do with it. The last time I had thyroid checked some of the problems were obvious to me but not the dr, but since then everything has got way worse than before. This is a new dr maybe he will not think I making the stuff up. Can you have normal results and still a thyroid problem? Ashley I am suspicious of the endometriosis...this may indicate some ovarian hormonal problems and as I said ovarian hormons in fluctuation or perimenopause or menopause can and DO cause many problems...and the symptoms are VERY similar to thryoid problems....I would pursue the thryoid testing (as already recommended) as well as ovarian hormonal testing....why don't you check out this site: www.power-surge.com it is a site for perimenopaual women and menopausal women (non commercial)...just for the heck of it read the 34 symptoms of menopause...and there is a great forum as well...ovarian hormones, estrogen, progesterone and other GYN problems can really cause a host of problems.....Joan